You are your own best advocate

****Let me start off by saying that I feel for this couple. To watch your loved one suffer and loose time they can never have back is a horrible thing and frankly one far too many people go through with our current medical system****

Usually after dropping off Nathaniel I tend to tune in CBC Radio. I find that since my car can get CJOB it helps me feel like I am in contact with the world around me and as my thoughts turn to politcal leanings and shifting my life’s purpose to one that calls me that knowing what goes on beyond my backyard is a great thing.

Today on the CBC show “The Current” they were interviewing a man whose wife was diagnosed with Stage 4 cancer in early May (in Alberta). At some point a medical professional assured them they would be getting calls in a matter of days, that this new treatment would be given to her in very short order and in general re-assured them that things would be handled. As time passed by and no calls came forth and his wife’s health continued to decline rather than make calls, be a pain in the ass, and press the folks that said this treatment was coming they continued to sit back and wait. Her health has now declined so much that it really is a matter of time.

At heart apathy is what is wrong with health care in Canada.

December 2007. We had company in from California. One evening while sitting and watching Kevin and Bill enjoy playing Assassin’s Creed I got a phone call. Strange to have a Dr. call you in the evening but I am blessed with a Rheumatologist that gives a damn. The call was to tell me that the referal had gone in, that I needed hip replacement surgery and that it was the only thing that could end my pain, my suffering. I checked wait times on total hip replacement and at that time it was 14 weeks average wait time. 14 weeks well that didn’t seem so bad to me. January wears on, February wears on and I even check with my rheumatologists office to see if they have heard anything. All they can tell me is that the fax was sent in early December and all they have is the fax number it was sent to. No Dr name, no clinic no idea where it went after sent into the ether that is sending a fax.

Starting in February 2008 Kevin began to push me to get angry and demand answers. Problem being..where to start. I sat down one day and wrote an email to two local papers and 4 Members of the Legislative Assembly (then Premier Gary Doer, Health Minister Teresa Oswald, Opposition Leader Hugh McFayden and finally Dr. Jon Gerrard Leader of the Manitoba Liberal). 10 minutes after my email went out I was on the phone with Dr. Jon and telling him my story and later that day a letter from his office went out on my behalf to the Health Minister. Within days I was getting phone calls  from people that knew everything..where it had gone, when it had gone, that it had been accepted by a surgeon and this was his process for getting his patients from referal to surgery. More answers in two days than I had in two months. Once I started asking questions and making it clear I wasn’t going away, I wasn’t going to wait, I had had enough folks started giving me access to information which by all rights was mine to know anyway. In under a month I had an appt, two weeks after the appt I had surgery dates, and I pretty sure I’d still be waiting if I hadn’t been pushed to speak up and advocate for myself.

Now back to this couple in Alberta. Their story touches me because it’s personal cord. Waiting for treatment which can change the course of one’s life is a reality that I am too familiar with. However, a small portion of their anger should be at themselves for waiting, for not calling the day after they were told to expect a call, for not taking advantage of the options to travel for care that they had (and not everyone has that option). I am not saying that the Dr that made promises of calls and told them of great new treatments that she should be getting is obsolved of guilt. A phone call however, would have given them the truth that this is not they way it works with this particular Cancer Care Facility. That there are processes that she would have to go through, referals and paperwork that would have to be filed, that Drs are booked, that time is precious. A simple amount of leg work by this couple, a seizing of their fates would have given them control over their current future. For now they simply have the time left because of how advanced this woman’s cancer has become.

I encourage all patients to question their Drs. If your Drs fail you you have options. Always be go to your MLA or a party leader. If someone can’t give you the answers get them from someone else. Empower yourself as a patient and press for what you need even if it is just the correct knowledge to make the choices to care for yourself.

You will always be your own best advocate.

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About Shirley Robert

Wife, Mom, Politician, Project Manager, Arthritic, Blue Bomber Season Ticket holder, Mary Kay Rep, and Advocate. I'm a whole lot of different and proud of it! View all posts by Shirley Robert

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